Coppieters M, Godin I, Coppieters Y, Gulbis B
Département d'Epidémiologie et de Promotion de la Santé, Ecole de Santé Publique, ULB.
Rev Med Brux. 2011 May-Jun;32(3):139-45.
Sickle cell disease (SCD) is the first genetic disease in the world and remains largely ignored by the population but also by health professionals. SCD is characterized by a variable clinical expression, however most of the patients are at risk to develop acute and severe complications conducting to a fatal issue. This study develops a qualitative approach to analyze the adequacy between the services offered for those patients in Brussels and the sociocultural characteristics of the target population and more specifically of the migrant population originating of sub-saharan Africa which is the most concerned. To have a global vision of the preventive and care services provided for SCD in Brussels, semistructured interviews were conducted with health professionals and patients associations. The results were analyzed to determine if they match the expectations of health professionals and audiences across the voluntary sector. The results show the absence of a real recognition at the national level of sickle cell anaemia, a deficit in psychosocial care of patients and their families. SCD is often considered by the African community as a disease of the curse which has to be hidden. To the physical pain and multiple organ complications one must add a psychological distress that patients drive back into silence. The management of this disease therefore requires a dedicated approach. With the exception of newborn screening performed in all maternity hospitals in Brussels and Liège, there is no specific measure for the management of SCD in Belgium.
镰状细胞病(SCD)是世界上第一种遗传疾病,但在很大程度上仍被大众乃至医疗专业人员忽视。SCD具有临床症状多变的特点,然而大多数患者都有发生急性和严重并发症并导致致命后果的风险。本研究采用定性方法,分析布鲁塞尔为这些患者提供的服务与目标人群(更具体地说是来自撒哈拉以南非洲的移民人群,这是最受关注的群体)的社会文化特征之间的适配性。为全面了解布鲁塞尔为SCD患者提供的预防和护理服务,我们对医疗专业人员和患者协会进行了半结构化访谈。对结果进行分析,以确定其是否符合医疗专业人员和志愿部门受众的期望。结果表明,国家层面并未真正认识到镰状细胞贫血,患者及其家庭的心理社会护理存在不足。非洲社区通常将SCD视为一种必须隐瞒的诅咒性疾病。除了在布鲁塞尔和列日的所有妇产医院进行新生儿筛查外,比利时没有针对SCD管理的具体措施。